Lisa - posted on 11/07/2013 ( 1 mom has responded )
My husband and I were told that our fourth child ( during a routine sonogram ) would probably terminate itself? We went through extensive testing and were told she had hydrops ( fluid around the back of her neck ) as well as an AV canal defect of the heart. We were devastated. The dr's asked us if we would opt to terminate which was totally out of the question! We were told that she probably had a genetic disorder such as Trisomy 13 or possibly Down syndrome, so an amniocentesis was done. Waiting for those results felt like an eternity on top of being told that we needed to come in twice a week just to make sure she still had a heartbeat? The amnio came back negative, so we thought that was great news? However, the dr 's said that only certain genetic disorders were tested for? There was still so many other syndromes she could have? It was now just a waiting game. Waiting to see if she could survive long enough to be born and then tested more extensively.
Raylee Jean was born on June 6, 2013 at just 31 weeks and weighed 4lbs 7 ounces. However about a pound of that was excess fluid from the hydrops. She was in heart failure and was not expected to live through the night. I was not aware of this at the time because I was taken into the O.R. directly after her birth for severe hemoraging.
Well Raylee proved how strong she was and fought to stay with us everyday! We found through more genetic testing that she had Noonan Syndrome. Her heart was also much worse than they had originally thought- her heart muscle was 3 times larger than it should be. Therefore, when her heart muscle squeezed for blood to be pumped, the walls were actually collapsing into one another. Her lungs were also very wet from being underdeveloped. She had to be intubated at birth in order to keep her from respiratory distress. We were then told by cardiologists that there was no surgery that could be done to reduce the heart muscle and because there were also holes from the AV Canal Defect, blue blood and red blood were mixing together. All we could do was try to make one situation a little better, only to worsen another one? They told us to enjoy the time we had with her, they would try to get her well enough to take home in a hospice program, and hopefully we could get her lungs healthy enough to extubate her ( remove the breathing tube )?
My husband, myself, my mother, and my aunt took turns staying at night with Raylee. She was never left alone. We also have three other children ( 14,12,& 8 ) who were home with everyone taking turns between the two places. It was a balancing act with no winning situation.
On Sunday, August 11 th, my husband came to the hospital to relieve me from the night before. He was returning to work the following morning after being off for weeks. It's crazy the things people have to endure because the world doesn't stop around you and the bills are still coming in. I left Sunday evening to return home with the other 3 kids. School was starting that Wednesday and I needed to get them back into some kind of routine and quickly!
My husband left Raylee that morning around 4:30am( he starts very early ). He sent me a picture of Raylee, the way he always did, and she looked okay. My plan was to return Monday afternoon. I called the nurse's station around 9am to check on her, and was told everything was the same.
My phone rang about 12:30 and I thought maybe they were going to let me know of an x-Ray or test about to be done? It was a nurse I knew telling me she was sorry, but that Raylee had gone into distress. What did she mean? She asked me to hold on and then a dr was on the other end saying something about chest compressions? I said I had to hang up and get to the hospital! How long would it take, he asked? Give me 15 minutes!
I dropped the phone and started screaming for my oldest to call dad at work and tell him to get to the hospital and quick! I dialed mom's work phone and as soon as she heard me, she knew. She said she was on her way!
I can't even tell you how I got to the hospital? I just remember thinking" I wish a cop would see me speeding and help me get there faster"!
I pulled up and didn't even use a parking space. I remember screaming that my baby was coding and they waved me in. When I walked in the hallway, a chaplain was waiting to escort me, but I couldn't wait! I had to run, run all the way until I got to the doors at the end of the corridor where my daughter's room was. I'll never forget all the faces I seen when the doors opened. I think I knew, but was in denial too.
The dr was still doing the chest compressions when I arrived, but she was already gone. My beautiful baby girl survived for 67 days and fought with everything she had in her! I keep telling myself that she is an angel with God and feels no more earthly pain. The pain is still excruciating to the point that some days I still can't get out of bed.
My husband and I have been discussing another pregnancy, but I am so confused with my emotions! I know I can never replace Raylee, but a part of me thinks it would help us heal? I physically hurt sometimes to hold my baby and have her close and it is emotionally draining! I'm 36 and not getting any younger, but don't know how long is enough time to start trying if that is what we decide? If there is anyone out there who has gone through something similar and has some advice I would greatly appreciate it! Right now I need someone to talk to, give advice and opinions, someone to say I've been there, and it will all work out okay.
Thanks so much for listening,